Is it illegal to stop administering prescribed non-life saving meds to someone w/dementia? Her body's alive, brain is dead, what's the point?

You are not demented or anything but compassionate. It seems as though your mother must be in late stage dementia. I'd talk with the doctor about hospice care. They do not administer life extending drugs. They do control any pain. If your mom is considered terminal within six months, she should qualify. Late stage Alzheimer's is generally considered terminal. If her current doctor isn't sure about her status you can ask for a second opinion.
Good luck. Many of us know what it is to see our loved ones "live" through years of misery. Few people would choose to linger like that with no hope.
Carol

As Carol said, have her evaluated for hospice. You can contact hospice directly - hospice is a direct benefit for MediCARE. If the facility take Medicare, then they have to allow hospice. You can select the hospice provider. Althouh I've found in dealing with 2 different NH for my mom, that the NH will have a special relationship set with a short list of hospice providers. You do NOT have to stay within that list if you (as their DPOA & MPOA and have the paperwork on that) want another group. VITAS is a big national hospice and they are very good and have high standards on personnel.

If this is a totally private pay facility, they do not have to allow hospice per se. They may have a "palliative care plan" that they do instead. It's really whatever is on the admissions contract and how the medical director and the DON set the orders for her care plan. Most NH have it such that the DON - (director of nursing) is really the god or goddess in the NH and the MD is just a once or twice a week visitor. But this facility may be one where the MD is more in-charge. Good Luck.

I agree with you completely. I have heard many times of medications being given and procedures being done of people with late-stage Alzheimer's. These things make no sense. For example, why should we be concerned about someone in the later stages of Alzheimer's getting osteoporosis? And are colonoscopies or mammograms really necessary, considering that we wouldn't want to do surgery and try chemo at a late stage. Sometimes we just have to use good sense. The physician in charge of your mother's care makes decisions about the medications. If hospice cannot be involved, perhaps the person who has the healthcare POA can speak with the doctor about discontinuing unnecessary medications. It would be one less pleasant thing your mother has to go through each day. I agree with you completely about stopping things that make no sense.

Thank you for the advice. The facility allows for Hospice care. I'm just not sure they would consider her terminal in 6 mos. If left to her own capabilities to care for herself she would be dead in 6 months. She is physically mobile and she feeds and "dresses" her herself (all be it in other people's clothes). Her body is better than most 78 year olds. They take good care of her in the ALF. She will probably live for 10 more years if they keep her cholestrol in check. She is miserable. She is anxiously awaiting the day "she will get out her box in prison and be free to live her life the way she wants to live it and where she wants to live it." She can't remember what she doesn't remember. She doesn't know that she only has 2 daughters and that they are sitting in the room next to her. She doesn't know that she can't read anymore or enjoy watching a movie. In her soul, she is a fighter. She doesn't realize she has lost the battle. She is emphatic that she is somewhere that she doesn't belong and she doesn't know why she has been put there, but she says it is a nice place and they treat her well. There is nothing on this earth, that any of us on this earth, can do to make her content. At this point, death seems to be her only path to peace. I prefer not to prolong her life with body sustaining drugs.

Rackem, if you have the healthcare POA, talk to the doctor about the way you feel. You may find that he is in agreement with you. I hope that is the case. I have heard that Hospice frequently does not use the 6-month rule when it comes to Alzheimer's. It is always worth a try. The worst they could say is "not yet."

Interesting question and answers. My husband is 87 and I think in late stage dimentia. He was diagnosed with dementia about 10 years ago. He takes a lot of non-life saving meds such as aricept, namanda, colesterol medication. He also takes warfin but that I think is life saving. He has had a 3-way bypass 21 years ago, and clots in the lungs, legs and heart. He also has PAD and had surgery 17 years ago on his leg. He goes to day care 2 days a week but sits and sleeps but it allows me time away from home which is needed. He lives with me fulltime. He can't feed, dress, or shower himself and is incontinent. If I were to quit giving him some of his meds, wouldln't it make him worse and then maybe become bedridden which is is not at this point. Would it make life harder for me? If I contacted Hospice, what could they tell me? How can anyone tell me how long he has to live. He burps constantly and I wonder what causes this and think maybe it is part of his heart condition. Like living with a time bomb. Any suggestions are appreciated.

Thank you and God Bless you all. Such a nasty disease and so difficult for everyone involved.

Here's my suggestion - call about and speak to a couple of hospice groups and tell them your situation. VITAS and Compassus are bigger national groups that are very good. Ask about if they work within the current facility and if not, why not. Hospice admission is set up so that there are 2 MD required evaluations for them to be on hospice - the medical director of the facilty and the MD of the hospice. You can ask for a hospice to go and do an evaluation of her at her facility. The facility cannot keep you from doing this, although they can be unfriendly to the RN who goes in to do this (had this happen at my mom NH #1). Again you can self determine which hospice as it is a part of the Medicare benefit. Now if the evaluation shows she does NOT qualify for hospice, that's that.

BUT if the initial evaluation shows that she would qualify and benefit from hospice, then schedule a care plan meeting at the facility to have a new care plan done for her and within hospice guidelines. Her med's will be for the most part stopped if they would cure a disease or make her uncomfortable as hospice requires that all care be palliative and comfort care. I'd speak with the social worker about arranging the meeting for you. Plan on having other family with you and you all HAVE TO BE ON THE SAME PAGE on what you want her care direction to take. A united front with the family being all kum-ba-ya in agreement is mucho importante!! If the medical director of the place refuses to sign off on hospice and the MD of hospice says she is qualified, then you are at an impasse. Realistically if that happens, then you need to find a new facility. The hospice will have a suggestion of places for her to move to, that they work with too,.

The social workers, I've found can be more independent in thought than the medical staff. Most states require that there is a SW on staff and they are licensed and reviewed differently than the nursing staff. So the DON has less influence over the SW. Understand?

Hospice now all has to be done with all the paperwork asap from the SOC date - which is the "initial date of election to hospice". You have to keep the hospice provider for the benefit period (1st & 2nd periods are 90 days, then after that it's 60 days) before you can change providers too. So make sure that they have a system and philosophy that you are comfortable with. Good luck.

donnalee...I know what you mean about living with a time bomb. Every morning, I hold my breath when I check on my mom. To find her breathing is both a relief and a dissappointment.

Rackem, my mom is 94 w/what they call "moderate-severe" dementia. I don't see those signs but that's what she's diag with. HOWEVER, as soon as she doesn't know me, where she is, or stops recognizing people, I'm moving her into our local Hospice House where I volunteer. And yes, of course I"m ready for the consequences...In reality, though, now that I think about it, mom's "existing" too, in fact, so am I, for if I stop one of MY meds, my heart may go into SVT & I'll die, although in MY case it may not be the case lol - I"m 52. But my point is if your mom is "existing" then I don't get why she's on Lipitor - that for High Cholesterol! Ok, THAT doesn't make sense - mine is only on the needed ones to prevent a heart attack due to severe CHF (potassium & Lasix)although the Lasix will in time cause kidney failure which the n.h. did NOT telll me about either!!! But talk to mom's doctor - as JessieBelle said. Then they WILL take mom even though she may NOT die in 6 mo - I'm leary of that myself...But anyway, talk to your mom's doctor & go from there - BTW I DO agree w/you ;)

Was wondering about the meds too. Husband has been on Aricept and Namenda for almost 5 years now. Do they still 'work'? Not sure what they were suppose to do. He cannot speak, will not get dressed and go to the doctor. I am thinking when his meds are gone, that's it. I have him off of his blood pressure, checking it about 5 times a week and it is fine. He is dependant on me, still goes to the bathroom. I prepare all meals, help him bathe WHEN I can drag him into the shower. I too wish he could go to sleep and that would be it. But I am so afraid he is going to be around for quite a while longer. Glad to know the way I feel....I am not alone.

My question to everyone that has a parent with Alzheimers or dementia is: What were your parent(s) wishes when they were alive? My mom always told me, "She didn't want to ever be like 5 out of 6 of her siblings that died from complications related to end stage Alzheimers disease." She could still eat until the very end, but, the nursing staff had to feed her. And, knowing my mother, she ended up dying on her 88th birthday (I was on my way to the facility she was in with cake and ice cream), it was her manner to "show me" that she was angry for letting her live in constant pain by letting the staff still give her medications that kept her alive. Fortunately, Rackem, you have sibling(s) that can help you make a descision. (My 3 siblings had nothing to do with mom or dad for over 20 years, and then they came back into my life when they thought mom and dad were at "death's door.) It is difficult to have a positive attitude when you are dealing with a situation concerning your parents, however, I make myself KNOW that there are others that are facing more difficulty than I am, so I attempt to count my blessings everyday when I get aggravated caring for my 92 year old dad.

My mother-in-law, who is 92 and blind from macular degeneration, has had dementia for about two years. She was in a care facility in Florida for about a year and we then moved her to Vermont to be closer to her family at her request. We found an ideal facility very near where we live and settled her in there, only to have them kick her out for her calling other residents terrible names and threatening people with her cane. She also punched the owner of the facility. She is now staying with us while we look for another facility (and the cane is now history - she has a walker now.)

She takes medication for her dementia, for high blood pressure and for COPD. There is also a prescription for her thyroid and supplemental potassium. I have long felt that she doesn't need all of these prescriptions. She prays daily for the Lord to take her, but she is in reasonably good health and could probably live for another ten years.

In my opinion, prescribing life prolonging drugs for people who have zero quality of life is downright cruel. I can understand pain relief, but the rest of this stuff seems useless.

Hello: I am sorry you are in this difficult situation. Did your mother have an advance directive? That would help to support your wishes to stop these treatments. It is not illegal to do so--in fact, the courts have frequently affirmed and upheld Americans' right to refuse medical treatment. Are you your mother's health care proxy? If so, you have the right to refuse this treatment on her behalf. You should look to hospices in your own community. They can now actually send a physician out to assess your mother and make recommendations to the nursing home--without having to admit her to hospice.

To the person with the question about Namenda and Aricept--those drugs are meant to slow progression for a bit, but often for not such a long term. In the meantime, they are expensive, and may not be doing much to help him, as it sounds like his disease has progressed. You are right, he may very well be around for more years to come. If you have not yet done so, you might consider contacting the Alzheimer's Association to find a local support group for caregivers in your community. That is often a helpful resource for families faced with challenges you describe.

I am not a clinician, just a writer--I hope these ideas are useful to you.

Best,
Janice

Normally Hospice does not accept Alzheimer's until they are no longer mobile or able to dress or feed themselves. That being said you can still encourage the doctor to discontinue her medications if you choose.

No, my father's neurologist ordered 'comfort care' only. He is off all meds except those for anxiety.

For what it's worth this is what has just happened with my mom & her drugs in her NH on hospice. She's mid-90's and Lewy Body Dementia and was good on her ADL's till recently - a tough tiny old bird type. Long story short, she fell again BUT this time broke her hip. No surgery for a # of reasons: age, her level of dementia is such that she could not do any rehab and she has a AD (advance directive) with a no surgery, no transfusion clause. She is now considered "bed-fast" and is on hospice. (BTW hospice paperwork very simple but lots of fyi documents - really a cakewalk compared to applying for Medicaid.) She now has class 3 & 4 pain med's because she has pretty deep pain as the break is many small fractures rather than the usual single break. She was initially on a morphine drip when she was in "crisis care hospice management" phase for the first few days - all this done at the NH. She will not leave the NH unless it is to the free-standing hospice facility (this is why we chose this hospice) so no hospital or ER trips. Her break is more of a hip shatter - so all those bone bits cause lots of pain. She has been taken off all her meds (heart meds, chloresterol stuff, Boniva, Exelon, etc) except for Remeron. The Remeron she has been on for several years so it's the kind of Rx that has to be titered down not stopped cold turkey. So Remeron is staying. In speaking with the nursing staff, this seems to be the approach if they go onto hospice. For her, it is now all about pain management so that she can be able & comfortable enough to drink and eat and not totally distracted by the pain. It's a tough call on this but thankfully she had AD done years and years ago so can follow through on her wishes. If you haven't had the difficult conversation with your elder on how to approach what happens when & if they finally get truly debilitated, please do so and involved other family members if need be.

She is physically mobile and she feeds and "dresses" her herself (all be it in other people's clothes). Her body is better than most 78 year olds.

in your original post I thought I was reading about a stage 7 Mom, but if your Mother is able to feed & dress herself why has she been in a facility for five years already, did no one want to deal with her in her own or your home where things are familiar to her and not be a prison? My husband is 82 he does not know that I am his wife and always wants to go home ( he is not a wanderer - yet) but he takes his meds, dresses himself, bathes shaves etc, and there are many times he is fun to be with, I would not even consider at this point (stage late 5- early 6) of sending him anywhere but here, I would not write your Mom off just yet, she is unhappy, yes, but even though she doesn't know you always remember you have to live in their world as they cannot live in yours, as long as I keep that thought, he is not a lost cause. He takes quite a few meds, but none that I would stop right now, I would rather deal with how he is now then to add a stroke or some other devastating illness into our lives now. if you Mom is only on a couple of meds as long as she takes them they are not going to change the outcome. Hospice & Doctors know when the time has come for them to step in.

My friend was able to stop her terminally ill husband's insulin. But, that was in a small town and they just went on her orders.

A very rough nite because my husband kept yelling he was il pain. He had a cathetor change yesterday which always causes some discomfort but this was way over the top. 8:00 p.m. I was going to take him to emergency but called Medication Management first and spoke with the nurse who said if there wasn't major bleeding and the cathetor was draining he was ok. I took all his vitals and all was in normal range. I gave him a vicodin for the pain and put him to bed about 9:00 p.m. Midnight he was up yellingand thrashing about the bed once again about the pain. Kept saying his gut hurt. When I pushed on the stomache he showed me where the pain actually was. Just couldn't verbalize I guess. Also kept burping and farting and wanted to get up. Walked him around the room, sat on the toilet and nothing so back to bed and I was about out of my mind at this point. Took vitals once again and called the nurse who said give him another vicodin and he went back to sleep. 3:00 a.m. he was awake yelling once again and this time I held his hand and told him the Dr. said he was ok so try to sleep. 5:00 a.m. awake once again and I went to get the vicodin and came back and he was asleep. I checked him for blood and emptied the cathetor and he went back to sleep with no meds.

I am wondering if he was stuck in his mind that there was pain and yelled like someone was killing him. I am a total mess today and it is only 7:00 a.m. I am exhausted, feel like a horrible person for yelling at him but how do you know when you should call 911 and there is a real need. How do you know if there isn't some real problem with the cathetor. Nurse says as long as it is draining in the bag and no major blood, all is ok.

Today is another day so we will see what happens when he wakes up. Going to use my quiet time this morning to get some rest and readjust my attitude. Today is support group for AD but glad I won't be able to go. I'd probably burst into tears when they asked me if I had anything to share.

Thank you for listening, it really helps to write out your feelings and then I will let them go. Today will be a better day and the sun is shining.

My suggestion is seek out an attorney! The legal right probably vary by state, so get with an attorney to know your rights and hers.

You do not state if you have POA or DPOA. If she is in a memory care center, then the doctor prescribing these meds is controlling her health. However, Zetia and Lipitor have huge side effects, the biggest being leg cramps, dry mouth and some others I can't remember at the moment. My husband was put on them and I stopped them when I saw the side effects. Of course, I have a nursing and social work degree and know my husband better than some doctors. Since she has dementia, there is no drug that is going to slow that progression and the drugs her doctor has prescribed are for high cholesterol and hypertension (high blood pressure). My mother had dementia too, but she died of CHF (congestive heart failure). If you have the POA, yes, you can refuse medications and no it is not illegal if you are acting in the best interest of the patient. Best wishes.

I posted to a new discussion topic "Changes to Medicare Hospice for Dementia patients - need another co-morbidity to qualify" but am alerting those asking / responding to this instant question. Due to abuses of hospice by some of the larger hospices, Medicare just came out with new conditions of participation. On the discussion topic listed above, I copied the letter from my husband's hospice. Patients can no longer go into Hospice care unless they have a co-morbidity. So Alzheimer's or other dementia alone will no longer quality them for hospice care.

YES,
It is awful to have a person with dementia/Alz and
I have heard this question posed so many times,
about cancer, etc, but with dementia Alz,
you do not necessarily know when the last 6 months are,
but why would you want to have a person with dementia, Alz
with body complications, still have the person live and suffer more???

Lack of Lipitor could produce a heart attack, but lack of any medication or supplements can produce many consequences for which they can still survive and suffer more.
Thank God we can have our own opinions

I think if you feel the need to ask this question, it may not be time to stop them. My dad was in end stage heart failure when he was admitted into hospice. We stopped his vitamins and other supplements. He remained on all of his CHF meds and coumadin for his atrial fibrillation until 5 days before he died. In fact, I still used extra diuretics to try and control his heart failure symptoms. To me those provided him comfort and as others have said, helped to prevent an even worse condition. He was admitted into hospice June 1, 2011 and passed October 26, 2011. In the week and a half before he died, he became very disoriented and eventually could not walk. That was when the hospice nurse and I decided together it was time to stop anything that was prolonging his life - heart meds, diuretics, coumadin. Do I think he died because we stopped his meds? No, he was already on that path. I also don't think it hastened his death. He was kept comfortable with pain meds when he was in pain or discomfort. He had been very clear that he did not want to live if he couldn't do things for himself or if he was confused. For myself, the decision at that point was the right one. Difficult still? Absolutely. But I knew I could live with it. That's the question you have to ask yourself. Good luck, Kuli

What we want to do and what the law requires is very different. Withholding those meds could land someone in jail. You need an elder law attorney.

meatjeanne - Talk with the Dr. before taking him off the meds -- I don't know if they are a "step down" med, where if you take the person off suddenly it causes problems (ie him coming unglued/agitated). The Aricept and Namenda slow the progression of the disease IF they work for him (you can look up the research studies online to better understand the statistics & how long the meds are likely to work). According to what I have found in the print-outs IF they are working and your husband comes off of them his condition will decline very rapidly to the point that it would have been had he not been on them at all (possibly bedridden, not able to go to bathroom, etc). Putting him back on them will not restore him to where he is now. If they are NOT working there should be very little change . So basically you can't tell if they are working unless you take him off and he declines, and the decline is irreversible -- sort of a rotten choice to have to make.
Is it possible to get home medical care from a visiting nurse or Physician's Assistant (PA)? Kaiser "prescribed" home nursing/physician's Assistant visits for dementia patient because they determined that the dementia made him "homebound" when it came to going to the Dr., (it was a bit of a fudge, since he could walk a mile if he wanted), but what was relevant was that he was mentally incapable of going to the Dr.s office due to his disease. It did make it MUCH easier to get medical care for him.

My sibs and I were assisting an elderly relative who was in a nursing home for an orthopedic injury that was not healing. When the docs told her the injury was not healing and that they could not perform surgery because shoe would not survive surgery (she was 92) she fell into a deep depression. She didn't want to live if her life would be restricted to the bed in the nursing home. And since she wasn't receiving rehabilitative therapy, Medicare wasn't paying for the nursing home, she was out of her meager savings. We found it interesting that as long as they were being paid privately, the nursing home people were very eager to give her anti-depressants and all of her regular meds. When she began to display typical end-of-life behaviors (like visits from dead loved ones) they put her on anti-psychotics. We questioned the need for those, since she was making it very clear she just wanted to die and she did not have dementia. The medical folks insisted she HAD to have those meds, and they would improve the quality and length of her life. Well, the day finally came when he savings were exhausted and she would have to go on Medicaid. Surprise, Surprise! The medical folks at the nursing home took my brother aside and asked him if we really wanted them to continue the anti-depressants and anti-psychotics and some of the other meds for non-life-sustaining issues. My brother told them no, that we were trying to have those removed for MONTHS! The medical staff agreed to take her off of anything but pain meds, and she died within two weeks.

I'm not saying that it was all about money, but the timing of the nursing home staff being suddenly agreeable to removing the meds was pretty interesting. We're glad our relative is now at peace.

I approached hospice nurse about certain drugs Mother has been on. After consulting with her doctor, too, he agreed that she did not need to be on anything but her thyroid prescription and Depakote ( shivers) to keep her calm. Disgusting disease. Five years ago when I became her proxy, I asked her then doctor about the validity of 21 prescriptions. Disgusting x 2.

Our situation had a similar, but in no-way-identical component, with my mother-in-law's dementia. At one point, when I got the most recent pharmacy invoice, I noticed that she was being given Aricept [used to temporarily reduce memory loss and thinking problems]. I had noticed she had recently seemed to be more confused and upset about things she had previously begun to ignore, or at least no longer dwelt upon: the behavior of other residents [shouting, crying, wandering into her room]; when was the bus coming to take her home?, etc. I asked why she had been placed on Aricept and pointed out that the only thing it seemed to be doing was making her suddenly aware of her unfortunate plight and depressing situation,and making her more miserable with that awareness.They agreed, but said the doctor had ordered it so they had to dispense it. I asked the supervisor to ask the doctor if it was necessary and to see if it could be discontinued. Bottom line: it was stopped immediately and I realized that some things may be done routinely because of the "general situation", but without regard to the specific needs and welfare of the patient. It was only increasing her misery, and ours when we witnessed it, rather than improving her quality of life.

Maybe too many people hold to the old school belief that "Doctor knows Best" and do not question prescriptions. I think most caregivers are way too smart and experienced for that. Bottom line, to me: squeaky wheel syndrome. I've got it. What meds should I take?! None!!! I'm going to keep squeaking loudly!!! Lol